Strong Voices

The Law Commission is reviewing the legal powers people are given to make decisions for others, something disability advocates say is well overdue.

The main law covering adult decision-making is the Protection of Personal and Property Rights Act (PPP&R). It dates back to 1988 and affects many in New Zealand’s disabled community. It is one of four laws that are coming under the spotlight.

The PPP&R has remained largely unchanged for decades, and disability advocates say it is outdated and leaves vulnerable people open to exploitation. Decisions can be made without consultation and people deprived of their rights and property.

And no-one is monitoring the behaviour of welfare guardians.

The Law Commission wants to know whether these laws strike the right balance between enabling people to make decisions about their own lives – with appropriate support from whānau, family, caregivers, professionals and the wider community – and safeguarding people from harm.

IHC Director of Advocacy Trish Grant is very keen to see the laws reviewed. IHC is New Zealand’s leading provider of services for people with intellectual disabilities. “This is the demographic who have the least amount of freedom. Every part of their lives can be controlled,” she says.

Trish and fellow IHC advocate Shara Turner met the Law Commission as it was drafting the terms of reference for the review, and are keen to be involved at every stage of the process.

Trish says it’s appalling that parties in Family Court proceedings can make guardianship orders without any understanding of disability rights – including GPs with no training in intellectual disability saying a person lacks the capacity to make decisions because they have Down syndrome.

“We have been disturbed by individual cases we have been involved with who have been subject to guardianship and property management orders. I think it’s very timely for us as a country to have a new look at capacity and how that impacts on our laws.”

Shara Turner, who will lead IHC’s response to the review, says there needs to be more flexibility and the law must assume as a starting point that people are able to make decisions. “We need to ask what do they need to help them make a decision? We need structures in place that aren’t as formal and rigid as guardianship.”

Law Commissioner Geof Shirtcliffe says the law relating to adult decision-making capacity covers a wide variety of decisions people may face over the course of their lives. “This law affects a significant range of people, and particularly affects disabled communities,” he says.

“Key law in this area hasn’t been reviewed in decades. There have been significant developments in his time. Our attitudes towards disability have shifted, and Aotearoa New Zealand has committed to implementing the United Nations Convention on the Rights of Persons with Disabilities.

In addition, as our population ages an increasing proportion of New Zealanders will require support to make decisions about their lives. Further, our law may not be compatible with perspectives in terms of te ao Māori [the Māori worldview], te Tiriti o Waitangi and the rights of tāngata whaikaha Māori [Māori disabled people] and their whānau, hapū and iwi.”

CCS Disability Action Midlands General Manager Colene Herbert has been dealing with these issues while working in the disability sector for more than 40 years – nine of them with IHC as Regional Manager of its former Family-Whānau services in Waikato and Bay of Plenty.

Colene says she has seen harm done. “Absolutely. I have seen families approach organisations wanting to take guardianship of people who have inherited land and property.”

She says sometimes there can also be a major conflict of interest when a family member who is a paid caregiver then also tries to seek control of the finances.

She is concerned that no one monitors the behaviour of welfare guardians. Each application for guardianship lasts three years and she says that is too long. The orders should be reviewed annually.

“There needs to be more checks and balances in place to determine the motives of the person seeking control.”

Colene hopes the Law Commission will recommend that an independent body be set up to monitor the situation. “They need to hear the stories of those who have lived with families and had their Eftpos cards taken from them and their benefits controlled.”

Her family made sure that her older brother Paddy Jones, who had an intellectual disability, was involved in the decisions that affected his life. “My brother passed away in 2011, but he chose to go into residential care when my Mum passed away. That was his decision.

“Me and my sisters took him around all the residential services. He decided he wanted to go and live at Te Roopu Taurima. He spent the last five years of his life there.” Paddy died there, in Hamilton, at the age of 69.

The Law Commission will conduct public consultation in 2022. In addition, it will work with disabled people and their representative organisations on accessible consultation processes, and maximise the participation of those individuals and communities most directly affected by the law relating to adult decision-making capacity. The Commission intends to report to the Minister of Justice by the end of 2023.

Caption: Outdated laws governing decision-making leave vulnerable people open to exploitation. Photograph: Zach Vessels – Unsplash